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[CrisTina83]

Hello Ladies.
I am a new member on this forum.
I’m 37 and just been diagnosed with POI and going through menopause.
 
I am very scared to start HRT because of the fact that I have positive ANA and I am at risk for developing Lupus.
There are studies linking HRT to the onset of Lupus.
My endocrinologist insists on starting HRT and prescribed the lowest dose of skin gel along with some vaginal progesterone.
And my rheumatologist says I’ll have to be monitored closely to make sure I don’t develop anything.
All this added to the stress of being an old lady before reaching 40 , took its toll on me. I am so scared and can’t stop thinking about this.
Has anyone beed through premature menopause and is ok?  I am lucky enough to have a 3yo son and all I want is to have the power to raise him and be near him.
I am really overwhelmed and thinking constantly that I will be very sick and die young.
Thanks for reading and sorry for the sad tone.

[CLKD]

Of course you are overwhelmed!

Do you have a good working relationship with the endo.?  It seems that you are being closely monitored.  The important issue is to protect heart and bones and this is something that HRT can help with. 

Osteoporosis - good diet, plenty of brisk exercise with your 3 year old in the New Year.  Skipping, swimming - we have several threads on exercise here ;-). Cycling.

What have either suggested in the first instance as treatment? MayB put the name/s of the medications into the search box on here - see what pops up and make notes.

   there is another support group: the Daisy web-site : for premature menopause where you might like to drop into.  Let us know how you get on.

[CrisTina83]

Thanks for answering.
I was prescribed Ginokadin cream and Arefam vaginally for progesterone .
My biggest fear is developing Lupus from the estrogens.
I feel like I hve to decide which is scarier ... Lupus or effects of menopause at my age. ☹️

[CLKD]

Do you feel rushed into making a decision? Sometimes it's overwhelming enough to think "I should do X, Y, Z or ....... "

Is there a lupus support group; you may also find answers on the Daisy web-site. 

If you put 'lupus' into the search box too?

[CrisTina83]

I am a member of the Daisy group. There are a couple of ladies there in my position - at risk for an autoimmune disorder. But these health issues are highly subjective. What happens to one, is not happening to another.
What I don’t understand ... does my menopause mean I will have lost 10 years of my lifespan? Because this came 10 years earlier?
It’s all so much to process. Lots of information , lots of “ifs”

[CLKD]

I doubt whether it has any bearing. After all, so many factors on a daily basis could extend/shorten Life.  Genetics being 1.  Life-style being a big influence.  I don't like alcohol - it makes me loopy although I do have a taste of anything good that DH might open ;-).  As an addictive personality I could well have turned to the bottle when depressed but choose not to.  Had I it might well have shortened my life-span.  I never smoked, preferring to spend my monies on bubble bath and good books 

I have long genes. Apparently.  Most have lived into their 80s and Mum is now 94. 

How is your exercise regime?  I need to walk more  .  lazy is my middle name  but for years I walked miles with the  every day.  On holidays in the Lakes, even further 

Don't try to look too far ahead.   Glean as much info on lupus as you are able to, a neighbour lived until she was mid-70s after diagnosis.  I think as with many conditions, it's about good management.

[CLKD]

Have you looked a 'Lupus UK'?

"Perhaps surprisingly, hormone replacement therapy, often given to treat osteoporosis in post-menopausal lupus patients, is generally well tolerated with few side-effects".

Steroids are used with success.  Advice is to keep out of sunshine. 

Do U have relatives with rheumatoid arthritis ?  It's often associated in the genetic link.

[CrisTina83]

Thank you so much for your kind words! I don’t drink or smoke, I am thin but I will workout more to prevent osteoporosis.
My mom has rheumatoid arthritis. So that’s why I am scared of getting Lupus. I know that patients with this disorder can have HRT. But I’d rather not be getting it in the first place.
A good advice is not to look too far ahead. You are so right. I tend to live in the future and I am a perfectionist. Anything less than perfect makes me anxious and depressed. So premature menopause was def not something in my “perfect” future plan.

[Cassie]

I started the gel at 40 as well as the progesterone due to premature ovarian failure.Its been a life saver, your body needs it and I wish you well, try not to stress, I also went through trying all sorts of alternatives but I found the gel worked wonderfully, just a small blob at night. I have been on it for over 15 yrs and intend to stay on it as long as I can, all the best.

[CLKD]

So there is a connection which is good, it isn't 'out of the blue' .  Is your Mum's RA well controlled?  How likely is it that you will get Lupus, that bus might be along B4 then. Quality of Life is something to consider.  You may have HRT until you are 70+ ;-).

A diet with plenty of dairy, fresh fruits, veg., greens ........ as well as brisk walking - is't what we are designed for .

[CrisTina83]

I am on a rollercoaster of all sorts of emotions right now. And huge health anxiety . So talking to you Ladies really helps. My husband is very supportive and so is my family so I am lucky. Also lucky to have a child as many women with POI didn’t have that chance. I know my blessings.
But still it is very hard.
I will try to take on more weight bearing exercises and have a DEXA to see the status of my bone density.
For me not getting Lupus is the primary concern right now and I think I will try to go without HRT . Maybe I can manage with lifetsyle changes. I really don’t know what is the best path for me regarding HRT.
My endo is scared about meno outcome for me and insists on HRT
My rheumatologist is scared about me getting lupus from HRT
So I am between a rock and a hard place

[CrisTina83]

Is your Mum's RA well controlled?  How likely is it that you will get Lupus, that bus might be along B4 then.


My mom’s RA is not so bad, she is active and almost as before , and on biological meds.

[Uptick]

Hi CrisTina83, welcome to the forum. I'm sorry you have to make this really tough decision, but I think you are a very well informed young woman and that is the first step to be in control of your health issues. POI may have autoimmune roots so you have to be monitored for from now on regarding other autoimmune conditions that could develop in the future. I know that HRT is contraindicated for lupus but as you said each person has a different response to drugs and to the autoimmune process. I suppose the best thing now is to put your doctors in contact with each other so they can decide what to do in case you develop osteopaenia or other serious symptoms from low oestrogen, if you decide to stay off HRT, or monitor your antibodies if you decide to try HRT. I'm sure you can manage lifestyle changes to minimise any potential future issues and it's a really good thing that you are being proactive and seeking information. Good luck and keep us posted.